On February 12, 2018, our beautiful baby girl joined our family and made us complete. Her daddy and I were totally in love with her. Her 25-month old brother, Zachary, wanted nothing to do with her. From the day AnnaBelle was born, everything just seemed harder with her – eating wasn’t something that was easy, her breathing often kept me awake at night and she cried so very much. I can’t tell you the number of times people would ask me, “why doesn’t she eat?”, “why does she keep crying?” and “what’s wrong with her?”. I remember one day saying to a co-worker, “I feel like a first-time mom all over again, except this time it’s harder.” Another time I remember talking with my sister with tears streaming down my face. “If I knew what was wrong with her, don’t people think I would try to fix it.” I said. And another time I said to her, “I just want to take her to the hospital and say please fix my baby, something has got to be wrong with her.” Little did I know that something was truly wrong with our baby.
Just before Anna turned 2 months old, she got sick. A trip to urgent care to see her pediatrician, confirmed she wasn’t gaining weight like she should, but first we had to get her well before addressing that. We were sent home with a nebulizer and instructions that if we had to use it more frequently or she started ‘see saw’ breathing we were to bring her to ER. A few hours later we left the ER after being told our baby girl had a heart murmur and we needed to follow up with our pediatrician.
April 18, 2018, just eight days later, we found ourselves at Nationwide Children’s Cardiac Clinic where we were hoping to hear “it will be fine”. Those were not the words we heard that day, instead it was “AnnaBelle has a heart defect that will require open heart surgery.” I’ll never forget that day as I felt like I had just been kicked in the gut. Next was a whole string of words that I can now recite like my own name – Partial AVSD (Atrial Ventricular Septal Defect), cleft mitral valve and pulmonary stenosis. We were given a list of things to watch for, contact phone numbers and instructed to have weight checks as we knew already she was struggling.
The next month was filled with weight checks, hours holding our crying baby as we struggled to get a couple ounces in her, a river of tears on my part, whispered prayers and desperate pleading asking God to just help my baby eat. By 3 months old our baby girl that was born at the top of the growth chart had dropped to the bottom of the growth chart. We made another trip to Children’s where we met with a dietitian, came up with a new plan and started fortifying her formula in hopes she would gain weight. The week that followed was rough as most days we barely met hydration level and didn’t even come close to meeting calorie goals. On May 24, 2018 Anna was admitted to Nationwide Children’s for failure to thrive. The eight days that followed were filled with the feeling of complete hopelessness as I willed my baby girl to just eat, lots of crying, therapist checking her, daily weights, NG education, eventually NG Tube placement and something new for Anna…vomiting. It was not what we wanted, but we knew we had to help our girl. She was skinny, losing strength and starting to show some physical development delays.
The next 2 months were filled with a feeding every 3 hours. Every feeding took about an hour. We had very little sleep, lots of tears and frustration, and vomiting, so much vomiting, 6 NG tube placements, many appointments, lots of phone calls, weight checks (two words that almost made me physically sick at my stomach) and the question we heard frequently “why does a child stop eating”? All I knew was our daughter did.
56 days after original placement, we were able to remove her NG tube. She had been able to meet her calorie goal for 6 days without assistance from the NG ,and in that time she had gained from 11lbs 12ozs to 14lbs 8ozs. Thanks to a lot of prayer, hard work and the assistance of medicine. Feeding from that point on wasn’t easy, but we did it one day at a time. Some days were harder especially when she felt bad, some days I wanted to give up, but every day we got up and started over and tried again. We went to Pediasure at 9 months (per the instructions of our dietitian), stopped using bottles at 10 months and still had very little solid food intake. Anna still vomited frequently, had some oral sensitivities and in March (at 13 months old) we started some feeding therapy. We celebrated a bite (literally a BITE) of food, a week without vomiting and every single ‘good’ day we could get.
Since February 2019 we really started to see a decline in her. She spent a lot of time just laying on the floor. She had a lot of what we referred to as ‘rough days’, crying, hard breathing and we spent hours in the chair just rocking. Her echo in February showed that her heart was starting to show some of the wear of working so hard, so her cardiologist planned for a sedated echo early May with intentions to move forward with surgery June/July instead of the original plan of August after she turned 18 months old. We didn’t make it to the sedated echo. Anna steadily got worse – spending the majority of her days sleeping, laying on the floor, hard breathing and just maintaining weight thanks to Pediasure. Lasix was added to her medicine and she was scheduled for surgery on May 8, 2019. I dreaded that day but I also just wanted it to come, I felt helpless. As a mom, I felt like I was supposed to fix it, but I couldn’t do anything to make her feel better. Most nights we spent in the recliner. As I held her little body up against me, I felt every single heartbeat and every rough breath and prayed asking God to just take care of our girl. It just about broke my heart in half and surgery felt like our only hope.
The week prior to Anna’s scheduled surgery, she developed a runny nose. We went to Children’s the day before her scheduled date for all her pre-admission testing. It came back that Anna had rhino virus, so they were postponing surgery 6 weeks. Inside I wanted what was best for my daughter, but how could this be best? She was struggling terribly and I had no idea how we were going to make it another six weeks.
But we did! Friday, June 21, 2019 Anna was scheduled for her Partial AVSD patch and pulmonary valvotomy. We had been prepped with all the statistics, told multiple times that this may not be the only repair she would need and we had friends and family all over the nation taking our little girl to Jesus in prayer. We showed up at Nationwide Children’s at 6:15am. She wasn’t happy about it, we were a bundle of nerves but knew we were doing what we needed to do. Her brother seemed a little confused about it all. We were prepared for a 4 to 6 hour procedure. At 3.5 hours we were taken into a conference room as the surgeon was ready to meet with us. We got the best news – Anna’s repair had gone wonderfully and he didn’t even do anything about the pulmonary stenosis because after the AVSD repair was completed, it seemed to be minimal. Her surgeon finished his conference with us by saying, “God bless. Go enjoy your girl”. Her recovery went wonderful except a little hiccup the first night where we determined that she doesn’t handle fentanyl very well as it caused severe apnea. Her medical team pulled code blue due to it, but was able to bag her and she came right back. It was the scariest night of my life and one that I will never forget. Thanks to a wonderful medical team, an awesome God and a little girl who doesn’t give up, we were able to leave the hospital, Tuesday, June 25th and continue her recovery at home!
It has been wonderful to watch her! Her little feet that were always so cold and strange colored are now warm, pink chubby feet. Her hair is no longer soaked in sweat while she sleeps. The cough that she never seemed to be able to completely shake, is gone. She eats – it’s far from perfect but food is going in her mouth. She has steadily gained weight, finally hitting 20lbs just two weeks post op! She has only vomited a couple times. Her heart that once beat so fast and hard that I could literally feel it when she laid against me, I now have to search for a pulse to count her beats. Her rough breathing has come to soft generally normal respirations. And the energy, oh the energy that is in that little tiny body! My girl that used to cry for bed at 8pm suddenly is still wanting to go strong at 10pm! She’s had a couple rough days since surgery but those rough days were what her ‘good days’ used to be. Our journey isn’t over as CHD doesn’t go away, it’s just patched. She is still currently on epaned to help her valve function. At Anna’s 3-week post-op appointment, her cardiologist told us the chance of another surgery is about 10%. I’ll gladly take that number!
Our little girl is amazing and has taught us so very much. Never ever give up (even when you feel like it). Celebrate every single little victory! Do what you need to do for the best interest of your child (regardless what others think or say). Find people who will love your child, because your child comes with lots of needs and many instructions. Find a support system who will let you cry (because you will), laugh with you (because it does happen), pray for your family (because there will be days you can’t) and will celebrate the little victories with just as much excitement as you have (because they are worth it – your child and you have worked hard). And pray a whole lot. It does get better. Your heart will be filled with thankfulness for all the people who had a part in getting your child there. Tears of thankfulness will run down your cheeks as your child that once struggled is now thriving! We are proof.
